Position Openings

CEO/Executive Director

BACKGROUND/MISSION

Founded in 1983, the Aplastic Anemia & MDS International Foundation (AA&MDSIF or the “Foundation”) is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. AA&MDSIF provides answers, support and hope to thousands of patients and their families around the world. We are a patient-focused, patient-centered organization, serving patients and families throughout the three phases of bone marrow failure diseases:
•the life changing phase of diagnosis
•the life-threatening phase of treatment
•the lifelong phase of living with a chronic disease

AAMDSIF fulfills this mission through a comprehensive range of activities including:

• Free, personalized support from patient educators.
• Developing and distributing a wide range of disease-specific educational materials and content including, websites, print materials, patient and family conferences, a comprehensive online learning center, peer support network and Communities of Hope.
• Funding medical research to advance the understanding and treatment of Bone Marrow Failure Diseases. Thanks to the generosity of those who support the Foundation, AA&MDSIF has awarded more than $5 million in research grants. 
• AAMDSIF maintains and promotes a global patient registry for PNH patients which gathers information from patients about their experience with the disease and will allow them access to this collective information. 
• Providing patients and health care providers the most up-to-date information about bone marrow failure diseases, their diagnosis and treatment.
• Raising public awareness about Bone Marrow Failure diseases.

AAMDSIF has an annual operating budget of $3 million, with a professional staff of ten. It has received Charity Navigator’s highest 4-star ranking for ten consecutive years. 

The Foundation is in Bethesda, Maryland. We are presently conducting operations in a hybrid format.

The Foundation is guided by a national board of directors composed of 11-15 members. The Board is composed of former and current patients, business executives, lawyers, and physicians. The Board meets quarterly with 1-2 in-person meetings per year.

 

THE OPPORTUNITY 

AAMDSIF seeks a highly qualified, innovative, and motivated leader who can build upon the Foundation’s successful track record and strong reputation.
 

Primary Responsibilities:

• Strategic Leadership:
• Collaborate with the Board of Directors to develop, refine, implement, and measure progress on the current and subsequent strategic plans and initiatives.
• Serve as a passionate and engaged Ambassador, articulating and communicating the Foundation’s vision and mission to a wide range of audiences and stakeholders.
• Identify and leverage emerging opportunities to deepen the organization’s impact, broaden its reach and strengthen and diversify its funding.

Organizational Management:

• Maintain a culture of excellence based on honesty, integrity, transparency, and accountability. Oversee the day-to-day operations of the Foundation and programs in such a way as to ensure that AA&MDSIF maintains and builds on its reputation as a well-managed, effective, and respected organization. 
• Lead the Foundation and staff in keeping with the Foundation’s Code of Ethics and internal policies. Ensures that the Foundation operates ethically and legally in all its dealings and maintains appropriate confidentiality.
• Develop and lead the Foundation staff, setting positive and clear expectations and objectives and providing opportunities for growth and development. Manage direct reports and outsourced accounting staff.
• Direct the ongoing development of an organizational structure and associated procedures that support the current needs of the Foundation and provide capacity for continued growth.
• Develop an appropriate annual operating plan and budget for presentation and approval by the Board and oversee its successful implementation. Maintain a continuous understanding of the Foundation’s financial position and outlook and commit to working to secure its financial future. 
• Ensures that the Foundation operates in a fiscally responsible manner, including proper internal controls, sound cost management practices, timely completion of the audit including any corrective action arising, and timely completion and filing of the form 990. 
• Supports the Board of Directors in its governance role and fosters its ongoing development. Keeps the Board fully informed on the operation of the Foundation and important external developments. Serves as a non-voting, ex-officio member. 

Development/Fundraising:

• Provide the vision and direction necessary to develop a thorough and fully diversified funding strategy that enables the Foundation to deliver on its mission now and in the future. Such a plan includes establishing clear goals (and tracking progress against them) and continuously identifying ways to secure new and increased funding sources. It also optimizes the available assets and skills of board members, staff, volunteers, medical advisory board members and other stakeholders.
• Lead the fundraising and development efforts, particularly in the area of developing strong relationships with key donors and corporate partners. 
• Be fully aware of and utilize emerging new technologies and strategies in service of fundraising and communications.

Programs and Services to Patients and Families:

• Provide the vision and direction necessary to maintain and continuously improve a robust, respected and sought after offering of educational materials, content, tools and support services to patients and families. 
• Be fully aware of and utilize emerging new technologies and strategies for communication and delivery of the Foundation’s materials and services. 
• Act as primary liaison with other bone marrow failure organizations around the world to best serve patients and families.

Communication with the Medical Community:

• Provide the vision and direction necessary to maintain and continuously improve a robust, respected and sought after offering of educational materials, content and tools geared towards the medical community to help raise awareness of Bone Marrow Failure diseases. 
• Work with the Medical Advisory Board to obtain and vet information, increase advocacy, and promote research.
• Act as the primary liaison to the medical and research community, building strong relationships with the Foundation.

Research:

• Work with all appropriate stakeholders to identify and develop research strategy and identify opportunities.
• Maintain up-to-date information on the pharmaceutical industry and current and emerging treatment options and clinical studies.

Advocacy and Awareness:

• Serve as the Foundation’s ambassador and ‘educator in chief,’ effectively communicating the organization’s mission to a variety of constituencies.
• Serve as persuasive representative for patients and mission promoting bone marrow failure disease issues to governmental bodies.
• Maintain up-to-date information on pending legislation with potential impact on bone marrow failure research issues that may affect patients and families and/or the ability of the Foundation to carry out its mission.
• Promote and execute government relations/advocacy plans to support organizational objectives and priorities.

QUALIFICATIONS:

• Significant track record of exceptional executive leadership, strategic planning, and performance excellence in a multi-faceted non-profit organization. 
• A background or experience in health services or patient support is not required but is preferred. 
• A leadership philosophy that embraces open communication, transparency, collaboration, and accountability operating in an environment of honesty and highest integrity. 
• A deep sense of compassion and empathy for the full range of issues patients and families face in dealing with serious medical conditions like Aplastic Anemia, MDS, PNH and other bone marrow failure diseases with a passion for making a positive difference in their lives.
• Excellent communication skills with the proven ability to successfully act as the primary spokesperson for the Foundation. Ability to communicate effectively with a variety of constituencies - including patients, families, doctors, staff, scientists, researchers, funders, government officials, business community and the media - is critical. Must be willing and able to understand, interpret, and translate somewhat complex medical/scientific concepts and information for a range of audiences.
• Demonstrable track record of revenue development success through the development and execution of a fully diversified development strategy 
• Proven ability to oversee the development and implementation of a robust and comprehensive support program that includes such as, educational materials, support services, conferences, assessment tools, etc. 
• Thorough understanding and experience across a range of applicable business and financial management issues/topics including human resources, organizational culture and effectiveness, resource allocation, and finance. 
• Track record of building and maintain strong, effective working relationships with a Board of Directors.
• College graduate: graduate degree desirable but not required. 

For consideration as a candidate of to suggest a prospective candidate, please contact in confidence The McCormick Group at: aamdsif@tmg-dc.com

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Position: 
Program Content Manager

Reports to:  Director of Patient Services

Organization Name: 
Aplastic Anemia and MDS International Foundation (AAMDSIF)

Job Description: 
The Aplastic Anemia and MDS International Foundation is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndrome (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world.

We are currently seeking an energetic, highly motivated, detail oriented super star with print, digital, and design experience to support our program and development staff in communications with donors, patients, families, and foundations who are critical to the success of our organization. If you love organizing, creating, designing, and keeping things on track this is the role for you!

There is no typical day at AAMDSIF, depending upon the time of year and the events our dedicated staff have on the schedule will determine your priorities of your time. Overall, the staff will be your team and your internal customers. Your focus will be on ensuring that our written and virtual materials are well branded, up to date, and consistent with our messaging. You will get to know our amazing patients and their families which will help you in your messaging and creativity.
Our materials are downloaded through our website and sent out to patients and their families daily and provide a lifeline to them throughout their journey of diagnosis, treatment, and survivorship.

MAJOR RESPONSIBILITIES:

• Coordinate the supply and distribution of educational materials sent to patients, family members and health professionals.
• Lead in the redesign of our present materials and ensure they are continually updated for accuracy and in accordance with new developments around the diseases and treatments.
• Support staff needs for communications (e.g., letter campaigns and other outreach campaigns).
• Work closely with the Communications Manager on social media and the website to ensure consistency with our written communication and education materials.
• Prepare PowerPoint presentations and other content for conferences, webinars, and speaking engagements per staff requirements.
• Develop overall publication plan to include cohesive design of publications for easy downloading and printing, frequently reviewing and updating content, and cost-effective distribution.
• Develop templates for all communications, educational materials, and publications.
• Support hybrid patient and professional conferences, including virtual platform assistance and travel as needed.
• Oversee new video productions as budget allows.

QUALIFICATIONS:

• Bachelor’s degree (minimum) 
• Marketing and/or communication experience
• Outstanding verbal and written communication skills
• Experience with data base management preferred
• Computer proficiency in programs such as Illustrator, Canva, Microsoft Publisher, Adobe, InDesign
• Collaborative, flexible, organized

Compensation is commensurate with experience and includes a comprehensive benefit package including health insurance and 403(b) plan.  Annual salary is $67,500. The position is fulltime and hybrid.
Send cover letter and resume to clark@aamds.org by September 6, 2022

Position Description for Program Content Manager

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JOB TITLE: Patient and Professional Program Coordinator

Reports to: Director of Patient Services

The Aplastic Anemia and MDS International Foundation (www.aamds.org) is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases.   
 
Summary:  Provides support to patient and professional services staff in coordinating projects and specific tasks related to program development, management, and outreach. The Patient and Professional Program Coordinator will function as the organizational contact for patients regarding patient learning events, participate in project development, manage project records, provide administrative support for educational programs and publications, provide technical support for webinars, assist in event preparation, and other duties as assigned. 

The ideal candidate will be comfortable interacting with patients and professionals, have experience in project administration and/or coordination, and have the ability to manage multiple tasks within different program areas to meet deadlines.

MAJOR RESPONSIBILITIES: 

• Assist in ongoing program support for patient focused educational conferences, including onsite support when needed
• Provide administrative assistance for patient webinars, conferences, and support groups, including coordination of speaker agreements and creation of events in online platforms
• Provide technical oversight of educational materials development 
• Maintain database records as well as formulate and run database reports
• Follow up with patients regarding service requests (conference registration, patient packet, etc.)
• Coordinate the annual grant application process, reporting requirements and other specific tasks related to the research grant program
• Assist with AAMDSIF Health Professional Programs, including event planning, reporting, onsite logistics for live programs, and technical support for virtual programs 
• Assist with management of AAMDSIF-sponsored research projects 
• Support AAMDSIF Medical Advisory Board communications and annual meeting 
• Coordinate and monitor the AAMDSIF Map of Specialists on the website 
• Update research and health professional content on the AAMDSIF website 
• Update AAMDSIF data base of health care professionals  
• Coordinate AAMDSIF health professional communications, including e-blasts, e-newsletters, social media and calendar schedule 

SPECIFIC SKILLS AND REQUIREMENTS:  
Minimum educational requirement is a B.A. or B.S. 

• Must have strong organizational skills and attention to detail 
• Exceptional verbal, interpersonal and written communication skills 
• Skilled in managing project milestones and deliverables
• Proficiency with Microsoft Office applications Excel and Word, as well as CRM database 
• Ability to work in a team context and demonstrate personal initiative 
• Ability to manage multiple priorities and capacity to meet overlapping deadlines 

Compensation is commensurate with experience and includes a comprehensive benefit package including fully paid health insurance and 403b plan. Annual salary is $67,500.  The position is fulltime and hybrid.
Send cover letter and resume to houk@aamds.org by September 6, 2022